A couple of blog posts were brought to my attention yesterday that got me thinking. Really thinking.

George thought I might be interested in a post on the blog, Wife of a Diabetic, and indeed, I was. As always, I encourage you to head over and read for yourself, but the title of the blog is pretty self-descriptive. From the sub-heading: My DH went from pills to insulin shots in March 2006 and he does not deal with it at all… And I need an outlet for my feelings and my thoughts…

I read this blog for a short while not long after I started blogging. Eventually, I stopped reading because I found her viewpoints toxic, and I thought Wife and her husband needed family therapy. Reading it started to feel voyeuristic, and even more unsettling to me, I had the skeevy sense that I was somehow complicit in their obvious dysfunction even though I know their issues will continue whether or not I read.

The post that George thought I should read was not specifically about Wife though. It was an email that Wife received from a reader, a man in his early 30’s, Gregory, whose wife has diabulimia, and who expressed how grateful he was to have found the spouse of another diabetic who doesn’t follow their regimen. What Gregory didn’t seem to realize was how Wife of a Diabetic is a sinkhole of negativity just waiting to suck in other spouses feeling lost and alone. I could feel the heaviness of my heart as I read Gregory’s email, recognizing the irrational priorities his wife has adopted in pursuit of thinness, knowing that as serious as her mental illness is, there’s treatment, and knowing there was no way to reach out to a man with nothing more than a first name.

For Gregory, the spouse in need of support and resources, of which admittedly there are not a lot, but they do exist, Wife was there to make a bad situation worse. “I think it’s a side affect [sic] of the drugs. Or a side affect [sic] of highs and lows…Don’t expect her to keep a promise. I don’t think it’s possible. Don’t expect her to be honest with you. Don’t expect her to take her meds.” Her advice was to either stay and put up with it, or leave. End of story. This woman with her own train wreck of a marriage was essentially telling him to sit on the train tracks and wait so he too could have his very own mangled mass of train wreckage.

I considered leaving a comment. I wanted to tell her she was wrong, but mostly I wanted to tell Gregory that he doesn’t have to park himself on the train tracks with Wife. A little bird told me that Wife reportedly doesn’t like to publish comments that don’t feed her martyrdom though. George told me he posted a comment suggesting that Gregory visit my blog, but more than 24 hours after the fact and as of this posting, his comment has yet to pixelate, proving the little bird correct. The irony that she has a blog to complain about a husband who refuses to engage in his diabetes care, yet she refuses to accept help from others or be constructively proactive was so obvious it hurt.

As I was digesting this, Kerri tweeted a link to Carey Potash’s post on Dlife’s Blogabetes about the death of Casey Johnson. You might be like me, asking, who the heck is Casey Johnson? Apparently, Casey Johnson is the daughter of New York Jets owner, Woody Johnson. If you aren’t a Jets fan, which is likely the case, you might be more familiar with the Johnson family from their endeavors in health and beauty products since this is the Johnson family of Johnson & Johnson, makers of such products as baby powder, Q-Tips, and One Touch test strips.

Ms. Johnson was only 30 years old, but she lived life on the edge, to put it nicely. Drugs, booze (there’s a theme going this week, eh?), and a nagging case of T1 diabetes dating back 12 years or so into which she reportedly never put a lot of effort. As Carey suggests, the irony is that Ms. Johnson’s dad is chairman of JDRF, and her name is plastered on widely-used diabetes management products. Not to mention that she was a gabazillionaire, and as we know, the richer you are, the better your health care services are – assuming you seek out those services, that is.

I contemplated these young women, Ms. Johnson who’s dead, and Gregory’s wife, barreling towards death at a pretty good clip. Two women with type 1, neither taking very good care of herself, one with what appears to be an eating disorder, and per Gregory’s account, has been diagnosed as such, and another with substance abuse problems, which much like an eating disorder, tend to be symptoms of other unresolved psychosocial problems. The bitter tone of Wife’s response to Gregory’s email, asserting his wife would never change, once a liar, always a liar, and he would just need to accept it or leave. The reports that Ms. Johnson essentially killed herself by not managing her diabetes.

I could almost hear the accusations that they did it to themselves. But did they? I’ve been down that road, so perhaps I’m biased, but I like to think I also have a shred of insight into how and why a diabetic travels that road at all. I think it’s shortsighted to lay the blame solely at the feet of anyone who’s lost their way with diabetes management. As a former non-compliant diabetic, I don’t mean to suggest that I didn’t have a hand in the self-destruction. It’s called self-destruction for a reason after all. However, it’s important to remember that diabetes mismanagement doesn’t happen in a vacuum. There are outside forces that can and do have an effect on disease outcome. Maybe the responsibility needs to be shared.

Yesterday, wondering what other diabetics thought, I posed the question on Facebook, asking anyone who might want to offer an opinion, who was responsible when a diabetic doesn’t do as they’re told. Scott Strumello, shared his insight:

There is no such thing as a “good” or “bad” diabetic — just as we all know the idea of glycemic control (implying that the patient has control over every situation) is also a lofty theory that too often fails in clinical practice. If anyTHING is to blame, it is not the diabetes, but the overly complex treatment protocol. To succeed with intensive therapy, a patient with type 1 diabetes must take 3+ daily injections of insulin (or pump therapy), 4+ daily blood glucose tests, and follow dietary and activity instructions, all of which is subject to change without notice and without warning at any point in time. The principle underlying intensive insulin therapy is grounded in the assumption that it is reasonable to expect a person to perform these acts every day for the rest of his or her life — therefore, it is the treatment protocol, not the patient nor the disease that is to blame!

I agree that the treatment protocol is ridiculous and labor-intensive. Pretending to be a pancreas day in and day out isn’t as fun as it sounds. If doing this crap every day until I die isn’t a complete time/energy/emotion succubus, I don’t know what is. People without diabetes only have the hardship of imagining living like this for a few seconds before they have the luxury of conveniently dismissing it as not as bad as we say it is without ever really having to do it.

We all know the rest of the world doesn’t “get” what it’s like to live with diabetes. Many think it’s the disease of fat people who eat too many donuts, and we just need to get off our collective asses and go for a walk, so we’ll all be cured. Forward your thank you notes to just about any mass media outlet for that prevalent misconception. If people are paying attention, they might notice the pump tubing and realize it isn’t a phone, or worse, a beeper, the surreptitious fingersticks, the dazed expression of a low BG. They aren’t privy to the perpetual mental purgatory where you are forever destined to obsess about how much insulin you took, how much you should take, what you should or shouldn’t eat and how many carbs might be hiding in it, and how this, that or the other thing is going to affect your blood sugar. All the bleeping time. Arguing. Cooking. Conversing. Dancing. Decorating the Christmas tree. Doing laundry. Driving. Funerals. Gardening. Graduations. Grocery shopping. House hunting. Job interviews. Masturbation. Meetings at work. Mini-golf. Movies. Participating in sports. Parties. Playing games. Reading. Sex. Shoveling snow. Showering. Signing up for a checking account. Sleeping. Standing in line at airport security. Taking exams. Trying on clothes at the mall. Vacationing. Walking the dog. Watching TV. Weddings. It interrupts everything.

And that’s not supposed to get tiring? We’re supposed to be OK with it and just suck it up without complaining, being pissed, or wanting to quit? When we aren’t OK with it, and we get tired, angry, depressed, and unmotivated, we’re seen as weak, lazy, undedicated, irresponsible, and of poor character? That’s justified, how exactly?

Since this is the treatment protocol with which we’re stuck though, how about a little more support from those people who call themselves our diabetes care teams? To a large extent, the label is a misnomer since we’re the ones burdened with all the work, but that shouldn’t absolve them of their responsibility to better support us. Where is the general consensus by the medical community that they’re screwing up by not providing the resources we need to properly manage this time, labor and emotion-intensive disease? Could there possibly be any correlation between their lack of ownership for the countless diabetics out there who have just given up the fight, and the emails I get almost weekly from people who want mental health help, but don’t know how or where to find it because it probably doesn’t exist in their community? The medical community just wipes their hands, pretending they’ve given us what we need, but I see marginal evidence that they even understand what we need since there aren’t adequate mental health services for most of us. Then they say we’re the ones who need to shape up or ship out if we can’t get with their program?

I can’t say whether or not something could have been different for Ms. Johnson. For all I know, people did try to help her. I’m pretty confident she probably didn’t get the post-diagnosis psychoeducation every last one of us should be getting about the behavioral health aspects of diabetes because I don’t think that sort of preventive protocol exists. The very notion that diabetics and their families be taught about the risks of depression, anxiety, food and body issues, substance abuse, family conflict and burnout before they happen is absurd, right? I guess it takes a girl with a psychiatric rap sheet that drags the floor to think up such ridiculous concepts.

As for Gregory’s wife, her symptoms sound pretty severe in that she doesn’t seem to have a lot of insight into the nature of her problem, at least based on Gregory’s description, but that’s a common feature in patients with eating disorders before they engage in treatment. It takes time and a good treatment team of both eating disorder and diabetes care professionals, but there’s nothing to indicate she is beyond recovery. Contrary to Wife of a Diabetic’s assertions that Gregory should just accept his wife’s mental illness, there is hope. I ask that you send a prayer, positive energy, or hopeful wish that he finds his way out from under the shadow of doom cast by Wife, and into the light of the rest of the DOC who will gladly welcome him and assist him in finding the resources he and his wife need so she can experience the joys of recovery that I’ve found. The Blame Game seems to be a fixture in life with diabetes, but if anyone is pointing fingers at me, I can only hope it’s because they recognize that I’m trying to change the rules of the game so people with diabetes end up winning.

Bob Clarke, former Flyer

When I was growing up, in an effort to relate to my new found insulin-requiring predicament, there were three people everyone told me about who had diabetes. The first was the ubiquitous Mary Tyler Moore. I watched a lot of old sitcoms growing up. Back in the very early days of cable, when lots of people didn’t have it, including my great-grandma and my Nan, when I stayed with them during school vacations, old sitcoms and game shows were the mainstay. Because I watched a lot of old sitcoms, it’s likely that I would have watched the Dick VanDyke Show regardless of Mary Tyler Moore, but because she was one of the three diabetics, I watched it with particular interest.

The second person was Bobby Clarke, hockey player for the Philadelphia Flyers. At the time, I lived in Houston, hadn’t ever been to the Northeast, and never really imagined myself going there, let alone living there. I knew nothing of hockey except the absolute basics – played on ice, there was a stick, and some little thinger pushed around with a stick. We’re talking rudimentary. To be fair though, I didn’t have any great interest in sports, and if I had to pick a sport, it would have been baseball as both my mom and my dad were Astros fans. Still, people told me about this Bobby Clarke fellow, which didn’t have a lot of meaning to me, but it was cool that this famous guy had the same disease I had, and people clearly had a positive association to him.

The third person with diabetes I heard about was everyone’s grandmother/grandfather/aunt/elderly neighbor who was blind/amputated/dead. Uh, thanks. That’s a frikkin awesome thing to tell anyone with diabetes, especially a little kid, you moron. ‘Nuff said.

So, the famous people who were living large with T1 diabetes were Mary Tyler Moore and Bobby Clarke, and they were my only evidence that I wasn’t a complete freak of nature, destined to become my own version of that third elderly, disabled person about which people were constantly telling me. Those two names I would hold tightly in my hand, ready to throw at anyone who hassled me about having a disease. Not that too many people got the opportunity once I learned it better to hold onto the diabetes secret even more tightly. Regardless of the fact that not everyone knew who they were, regardless of the fact that my own knowledge about them was relatively limited, that these people who others recognized and admired had the same disease as me was a little something good when all I could see was a whole lot of bad.

I moved to Philly when I was 12 years old, but never took an interest in ice hockey even though people in Philly are pretty fond of their hockey. Jason, on the other hand, used to be a huge hockey fan. He’s not as into it anymore, but he still enjoys it. We’ve been to a couple of Flyers games when Jason has gotten some tickets from people he knows, and he’s patiently explained the game when we’ve gone to games so I know a little more about it than those aforementioned rudimentary basics – you know, ice, a stick and a puck. I do have a problem with the fighting that occurs because phsyical violence bothers me, but that aside, going to games is a lot of fun.

I mentioned yesterday how Jason and I have been to my local JDRF’s annual ice hockey fundraiser. One year that we went with our parents, there was a raffle for which my mom bought a bunch of tickets. She actually won a hockey jersey signed by Bobby Clarke that she gave to Jason. At the moment, it’s just hanging in a closet, but someday, if we have a bigger house with a rec room, Jason wants to display it. So between Jason being a Flyers fan, Bobby Clarke being a former Flyers player, and the way I identify with just about anyone who’s lived a life of urine testing, BG testing and insulin injections, my initial sole connection to hockey in the form of having the same disease as a former player has expanded a bit over the years.

Bob Clarke's Autograph

Yesterday, I also told you about the two Animas reps with whom I chatted at JDRF’s Outreach meeting this past Monday night. One of them, Bill King, a long distance runner who in addition to his position with Animas, does a lot of speaking engagements and is affiliated with the Diabetes Exercise and Sports Association, has had T1 for about 25 years. As it turned out, he happened to be the guest speaker at my local diabetic teen support group to which I went Wednesday morning. This was the second time I’ve been this fall because I’m scheduled to be the guest speaker in April, so I’ve been hanging around so the kids get used to seeing me. Plus, it’s offered some good networking opportunities as I work to get the word out about the art therapy groups. The December meeting of the support group was held at a local ice skating rink. They have rooms for things like kids’ birthday parties, so the first part of the meeting was in one of these rooms, with Bill speaking, breakfast wraps (bacon!!) kindly marked as being 45g carbs per wrap, and a raffle for 2 pairs of tickets to Flyers games, followed by time to ice skate. Bill talked about the importance of exercising and the like, until the group facilitator rushed out to do something. I had no idea what was happening, but suddenly there was an older man standing in front of the kids alongside Bill.

I suspected I knew who it was based on the way they were acting, but finally Bill introduced Bobby Clarke! I was just giddy! No matter that I’m less than well-versed in hockey, I was surprised at how emotional I felt being in this little party room at a community ice skating rink with a room of maybe 16 teenagers, a handful of other adults, and Bobby Clarke, the famous diabetic professional hockey player.

He talked about playing hockey in the days of urine testing and a single daily injection, having to go by the way he felt to treat lows. He talked about having had a severe low and ending up in the hospital in his late teens, and how that scared him. He talked about treating lows during hockey games with Coke, and how no one noticed or cared because all the other players were drinking Cokes too. He talked about having been a T1 for almost 50 years now, and how he hasn’t had any complications, something he attributes to exercising and staying active. I don’t know how many times I have to hear about the importance of exercise before I actually do something about it, but I can’t think of too many people from whom I’d rather get that message.

Once he was done talking, some group pictures with the kids were taken. Autographed pictures were distributed, and I made sure to grab one. Then as he was leaving, I rushed over to shake his hand and thank him for being such an inspiration. It seems kind of silly, and I never would have imagined myself having such a strong response, but it was unspeakably cool to shake hands with the man who was nothing but a name to me when I was 5 years old, but it was the name of someone just like me who was doing exceptional things despite having T1 diabetes, someone who didn’t allow everyone’s tales of disabled and prematurely dead older relatives stop him from doing everything he wanted and so much more than he likely imagined. It probably doesn’t seem like such a big deal now because people do all kinds of things with T1 now – run marathons, climb mountains, play every professional sport imaginable – but it wasn’t like that when I was a kid, so meeting Bob was an exceptionally cool experience.

Jason and I were talking the other night over dinner. I was telling him about the Green Family Foundation Blogger Roundtable on Access to Healthcare I attended, and how many of the participants talked about the need to put a human face on the issue. In that moment, I thought of the video I saw of a disabled woman at a town hall meeting, in New Jersey which only amplified my shame and horror since it was the sort of thing I hated to see emanating from my own backyard. The woman was in a wheelchair and was trying to describe her ailments and the financial nightmare she experiences trying to get her healthcare needs met. She was heckled and booed by the audience in what was one of the most disgusting displays of inhumanity.

I relayed to Jason how, with that video in mind, I had said to my fellow discussion attendees, “I hate to sound like a cynic, but I don’t know that putting a human face on it is as effective as we’d like it to be. People just don’t care unless it personally affects them, unless it’s their family member who’s sick and in need of medication, supplies and treatment.” Very matter-of-factly, Jason agreed with me. He said if it weren’t for me, he wouldn’t know or care about health care reform. He wouldn’t know or care about diabetes. He said, “If you didn’t have diabetes, you wouldn’t know or care either.”

I grudgingly agreed with that last part, although who I would be and what my priorities and values would be if I didn’t have diabetes is completely unimaginable to me since diabetes has shaped every facet of my personality and every aspect of who I am. Trying to fathom what I would be without diabetes is like trying to imagine what a child who died at age 5 would be like at age 36. Lee Ann sans diabetes slipped away during the Carter Administration, back when her priorities were the latest Barbie, a new box of crayons, Fun Dip, and Little House on the Prairie. Heaven only knows who or what that little girl would have grown up to be. Maybe she wouldn’t care. Maybe she would.

Now all that remains is Lee Ann with diabetes. Since this is who I am, I do know way more about diabetes and about needing healthcare than the average person. I try to be very understanding and forgiving that the rest of the world isn’t as knowledgeable about diabetes as someone who actually has diabetes. I love when people ask me questions about diabetes. LOVE it. Ask away, and I’ll explain whatever you want to know for as long as you’re willing to listen. It brings me delight to educate someone because any block I can remove from the fortress of misconceptions is progress. Maybe it’s not much, but it’s something. One less person walking around thinking I have diabetes because I ate too much sugar or thinking I take insulin so I must be at death’s door is a check in the success column as far as I’m concerned. But where do you draw the line between forgivable unawareness, and unconscionable ignorance?

I actually don’t encounter blatant ignorance that often though, at least not in real life. I’m guessing that probably has some relation to the fact that I don’t leave the house that often, and when I do, I don’t necessarily interact with people. That’s just a theory I have though. However, I hear about ignorance on the interwebz. The most recent that leaps to mind was brought to my attention by Wendy via Shamae at Crazy Happy Life. It was the case of Mr. Barber, the jerk who wrote his local paper to complain about a child taking an injection at a nearby table in Burger King, ruining his lunch. I think it’s a fair assumption that the child was taking insulin, based on the account. While we’re all terribly sympathetic that Mr. Barber’s lunch was ruined by such a thoughtlessly gross display of diabetes self-management, I suppose it never crossed his mind that every meal that child eats is ruined by having to take an injection. Unfortunately, I’d say from the tone of the letter, even had that crossed his mind, he wouldn’t care either way.

That letter was appalling, but even more appalling was the level of ignorance it represented and the fact that there are people like that everywhere. Ignorance is all around and inescapable, at your child’s school, at your place of employment, amongst your friends and family, in the editorial section of your local paper, and apparently, sitting a table away from you at Burger King. How do we even begin to quantify the ignorance? Well, you and I can’t really do that despite the often overwhelming anecdotal evidence we amass, but apparently the American Diabetes Association took a little poll in an effort to measure just how clueless America is about diabetes. Even with the knowledge that there are more Mr. Barbers out there than I care to consider, I shook my head in complete dismay as I read this article in Forbes about the survey.

“Diabetes is responsible for more deaths each year in the United States than breast cancer and AIDS combined, but just 42 percent of those surveyed knew that diabetes could be so deadly.”

Honestly, this is a whole other post that I probably won’t even ever write because it’s one of those if-you-don’t-have-anything-nice-to-say-don’t-say-anything-at-all posts. If we ever sit down over some diet sodas though, feel free to ask me, and I’ll freely share my thoughts on this.

“Those who have the disease often say the lack of awareness can feel like a lack of support.“

Welcome to the pancreatically challenged corner of the universe.

“‘… and at a party, nobody thinks about something simple, like getting diet drinks.’”

This is a quote from a woman interviewed for the article, and it rang true for me. I love my diet soda, so this is a big pet peeve of mine. I probably need to get back in the habit of just carrying extra diet sodas with me wherever I go.

“McLaughlin said a common myth is that sugar and overeating cause diabetes. But, that’s not true for either type of diabetes. Diet isn’t a factor at all in type 1 diabetes, an autoimmune disease in which the body mistakenly attacks the islet cells in the pancreas, destroying the body’s ability to produce insulin.“

When I read an actual distinction between T1 and T2 that’s also accurate, it makes me giggle like a schoolgirl.

“Still, only one-third of the people surveyed knew that too much sugar did not cause diabetes.“

Ugh. I’ve been hearing this one since 1978, and it makes me want to scream.

“Just 12 percent knew that people with diabetes don’t have to follow a more restrictive diet than the healthy diet that’s recommended for the general population.“

I hope the day will come when I can eat a piece of cake and not get looks or comments, but if 88% of people think I can’t eat cake, I just don’t think the day will ever come when I can eat cake in peace.

“Almost one in 10 respondents thought there was a cure for diabetes, and 19 percent weren’t sure. (Although there are ways to manage diabetes, there is no cure.)“

Holy %$#@. Seriously? I think this stat is probably the most upsetting for me.

“Less than 60 percent could correctly distinguish between type 1 and type 2 diabetes.“

That’s better than I would have predicted. But it still sucks.

“Almost 20 percent erroneously believed that the death rate from diabetes was declining.“

This is a close second to the 29% who either think there’s a cure or aren’t sure if there is one.

“Overall, Americans scored a 51 percent on the survey — a failing grade.”

We have so far to go, my friends. So. Far.

Since it’s American Diabetes Month, maybe we can make a little progress though. As a means of combating the misinformation, mistruths and misconceptions, the ADA has launched Stop Diabetes:

a movement to end the devastating toll that diabetes takes on the lives of millions of individuals and families across our nation. It will inspire and mobilize the general public, volunteers, donors, corporations and the scientific and medical communities to rally around our cause and our call to “share, act, learn & give”. Through these actions, millions will have the chance to get involved and help raise awareness, promote healthy living, and raise money to fund educational outreach, advocacy efforts and critical research that will ultimately stop diabetes once and for all.

I think it’s worth a click to check it out since we obviously need all the help we can get to chip away at those awful statistics. I dig the little hand logo too (although I’m bummed I couldn’t find a larger version of it…), and obviously, I think any kind of visuals are great for the purpose of raising awareness. The ADA has also redesigned their main website, so when you get a chance, you might want to check that out too. Everything we do to reduce the number of Mr. Barbers in the world is a step in the right direction, and we cleary have a lot of ground to cover, so let’s get moving!

* Just a reminder that I’m donating money to two of my favorite diabetes organizations, Behavioral Diabetes Institute for every comment I receive this month, and Diabetes Hands Foundation for every click I get on November 14th, World Diabetes Day.

It’s difficult to know what to say or how to respond to someone who’s upset. Being with someone who is angry or sad can be uncomfortable, especially when there isn’t an obvious answer or solution. As the person who wants to console someone who is upset, it’s a reminder that we’re only human and we don’t have the power to rectify every issue that life brings. It’s a reminder of our own vulnerability to pain and loss.

I can say that as a therapist, even though helping people deal with emotional pain is an inherent part of providing mental health services, I experience discomfort when I can’t offer a solution to someone. I can’t undo someone’s traumatic experience. I can’t bring a loved one back from the dead. I can’t put a broken relationship back together as it once was. Maybe I can help someone take something that’s fallen apart and reshape it into something new, but there’s still a loss that has to be grieved and hopefully accepted, and even a loss that’s accepted leaves a void. If I don’t tolerate my own discomfort, I can’t expect a client to learn to tolerate and cope with theirs. My sadness and discomfort give me a glimpse into what the client is experiencing so I can better meet their needs as their therapist.

In some ways it’s different, and in some ways it’s the same when it’s someone in my personal life who’s in a bad place for whatever reason. It’s not necessarily my responsibility to guide them towards a solution, but even so, I still wish I could because no one likes to see someone they care about feeling bad. I still wish I had the right thing to say to make them feel better, although, I always try to remember that sometimes there isn’t anything to say at all. Sometimes, it’s OK to just be there and listen because sometimes just feeling heard and understood is enough. To have a friend who cares enough to sit with you while you cry or rant is a great thing. To have a friend who cares enough to just sit with you so you don’t feel so alone in your pain is something we should all be so lucky to have.

Most of us have been upset about diabetes and needed some understanding and support. Many of us have also been in a position to offer understanding and support to someone we knew was frustrated. I try to give encouragement when I know one of my DOC friends is having a bad D day, and I’ve received more encouragement and kind words than I can even quantify. It’s great to be heard, it’s nice to feel understood, and as always, knowing others who “get it” makes such a difference in living with diabetes. It seems that expressing anger, sadness or frustration about life with diabetes occasionally elicits some less than helpful, albeit well-intentioned comments though, which is troubling to me because comparable comments for other heartaches that life brings would be unthinkable.

If someone’s friend dies, is it OK to say, “Don’t feel so bad! At least it wasn’t your child/spouse/parent!”?

If someone were to need their foot amputated, a fear with which most of us can likely identify, would it be OK to say, “Well at least they only cut off your foot, and not your whole leg!” or “At least you still have your other foot!”?

Would you say to someone with a form of cancer that has a high recovery rate, breast cancer for example, “Be grateful you have breast cancer, and not liver cancer!”?

So why is it OK to say to someone who is having a hard time with their diabetes, “At least it’s not cancer!”? In any of the aforementioned scenarios, would those statements be true? Would it really be better to lose one foot rather than two? I think so. Would it be better to watch my friend die than my husband? Well, if I had to choose, I’d be more devastated if Jason died. Do you say those things though? Gosh, I hope not because those aren’t sensitive, comforting, empathetic responses.

It has always bothered and boggled me that people compare diabetes and cancer. It bothers me that there are sometimes heated online debates about which is worse. I’ve never had cancer. I’ve had friends with cancer. I had a friend who died of liver cancer just short of being 5 years clean of breast cancer. My grandfather died of cancer when my mom was all of 6 years old. I’ve also known people who’ve had it, beaten it, and not had any recurrences. I’ve never had an up-close and truly personal experience with cancer, but even if I had, I don’t think it’s my place to compare the two. From my limited perspective of only knowing life with diabetes, they seem like different brands of suck. Ask other people though, amd I think the general consensus is that cancer is worse, but why does it even matter? What on earth is the point of comparing them? At the end of that argument, is there a winner? “Yay! I win! I have the worst disease!”

So why do people say, “At least you don’t have cancer”, to people with diabetes? Maybe there are people who take solace in that, but I find it kind of insulting and demeaning because I think the implied message is that I don’t have a right to feel bad about having diabetes. Most of the time, I’m actually pretty grateful for diabetes, or at least all the positive things that have come of it. I work really hard to foster a positive attitude in myself, and I hope I can inspire the same in others, although I know I’m not Suzy Sunshine about diabetes all the time. However, on those occasions when I get down about it, haven’t I earned the right to be angry, sad, frustrated or fearful because diabetes is a lot more rotten than it looks on the surface? Isn’t there something more helpful to say than reminding me I don’t have another awful disease?

Maybe it’s true that we should all be glad we don’t have cancer. Whether that’s the case or not, I’d like to suggest that there are better things to say to someone who’s having a bad D day, who’s been riding the BG roller-coaster, feels like crap, and just wants a reprieve from the glucose tabs and fog or dry mouth and lethargy, someone who’s in a panic because they’ve found themselves out and about without emergency sugar or back-up pump supplies or test strips, someone who is just tired of the constant misunderstandings about what diabetes is and how it’s managed, or someone who can’t tolerate wasting another minute of their life on the phone arguing with their insurance company. Just because our disease isn’t as bad as another doesn’t mean we deserve to be blamed, judged and ridiculed. It doesn’t mean we’re going to be grateful or feel blessed all the time, sometimes or ever. If I do say so myself, I think that’s just a ridiculous expectation to place on top of all the other expectations that come with managing diabetes 24/7.

What do you say to someone who really doesn’t want to be told, “At least it’s not cancer!”? How about, “I’m sorry you’re having a hard time with your diabetes”, “I can imagine how monotonous and frustrating it gets”, “We all have bad days with diabetes, so remember you’re not alone.” Minimizing someone’s emotional reaction to having a life-long disease that requires more of the patient than most other diseases is not supportive. Invalidating a pretty legitimate and justified emotional response to a pretty tiresome and scary disease is thoughtless and insenstive.

It’s not cancer, but it’s diabetes, and it sucks. A lot. Offer compassion, sensitivity, or kind words. Or don’t say anything because sometimes we just want to be heard and understood, and not made to feel like we don’t have a right to be upset that we have a chronic, incurable disease. At the very least, we deserve that.

* Just a reminder that I’m donating money to two of my favorite diabetes organizations, Behavioral Diabetes Institute for every comment I receive this month, and Diabetes Hands Foundation for every click I get on November 14th, World Diabetes Day.

The battle to educate people about type 1 diabetes and more specifically, how type 1 is different from type 2 seems never-ending. I’d love to think that the day will come when the differences will be general knowledge, but I don’t anticipate that ever occurring. As frustrating as it feels sometimes to have to explain and correct, I acknowledge that it’s totally unrealistic to expect people without personal experience with diabetes and thus no incentive to learn about it to know even the most rudimentary of facts about the disease most of us could give technical lectures about even if we’d been doing shots (I don’t mean insulin either) and popping rufies all night, hypothetically speaking of course.

It’s not so often that I get annoyed with people I come across in day-to-day life, usually posing as “The Diabetes Police”, who need some D-related clarification. I know the majority of people’s knowledge base is as outdated as beef-pork insulin and Clinitest. Would my life be easier if I didn’t have to explain that it’s OK for me to have a slab of chocolate birthday cake? Yup, but the way I see it, those types of interactions are just part of the package deal that diabetes is, and getting too bent out of shape isn’t doing me any favors. Mind you, that doesn’t mean I don’t have my moments when that sort of thing doesn’t annoy me, but as often as I can, I take it in stride.

There are people out there who should have a clue though. I’ve heard stories of doctors who are still handing out diabetes-related advice from “My First Med School Textbook” published back when Vietnam was the war people loved to hate. OK, that might be a bit of an exaggeration, but if an active 25-year old with an otherwise normal weight shows up in your office, having had sudden significant unexplained weight loss, polydipsia and polyuria, are you seriously going to automatically diagnose them with type 2 just because they’re not a juvenile? Every time I read accounts like that, I scratch my head in utter bewilderment.

The media needs a lesson from Dragnet

The media is another source of out-dated and/or wrong info. I’ve read articles and seen news clips that made me cringe because someone was presenting diabetes-related news that left me wondering if the organization’s fashion editor had been assigned the job of fact-checking. I don’t doubt that it’s common for someone without personal experience with diabetes to write such news. It’s certainly not practical to have experts on every imaginable topic on staff, but if they’re publishing or airing something about diabetes, they’d better do their research.

Today, I was surfing to interweb for the latest diabetes news, and on the ADA’s website, I came across Does Ruling Put Diabetic Students at Risk? I’ve read several articles over the last couple of months about how California school nurses fought legislation that would have allowed non-nurse school personnel to administer insulin and provide basic diabetes care to diabetic students in California schools. The nurses won, much to just about everyone’s dismay but them. The problem is that there aren’t enough school nurses to go around. Some schools don’t even have one because districts can’t afford them. Now, diabetic students who don’t attend a school with a full-time nurse are SOL. From what I’ve read, parents have taken their children out of schools because they weren’t comfortable leaving their children where no one was allowed to manage their medical condition. There are parents who are now at the school’s beck and call, forced to go to the school to take care of their child’s needs, and there are parents who have felt obligated to quit their jobs in order to be available. What’s insane about it is that if all of us, minus degrees in medicine or nursing, are capable of managing our diabetes (or our children’s diabetes as the case may be), why isn’t a teacher or other school personnel just as qualified, provided they get the same basic training the rest of us have received?

The school nurse issue is actually incidental, but interesting nonetheless and the main topic of the article in question I found on the ADA site. Because I’d taken an interest in the issue, I read the article to see if there had been any new developments. At the end of the article, written by Dana Hull, originally published in the San Jose Mercury News, and republished with permission by the ADA on their website, there was a brief explanation of the differences between type 1 and type 2. I totally dug that they included that since the article was written for the general newspaper reading population. Kudos to them for that. However, below that was this: “THE SYMPTOMS Often Type 1 and Type 2 diabetes go undiagnosed, sometimes for years…”

Today was not one of those days that I let a little piece of misinformation slide by so easily. Had I come across this on the San Jose Mercury News site, I don’t know if I would have been as annoyed as I was. That this article was re-published on the ADA website without any correction, boggled me. Do they not read what they re-publish from lay news sources to make sure the technical information is correct? Did they read it and not care? Either way, I think it’s unacceptable that the leading diabetes organization is publishing incorrect information about diabetes on their website. I have my bones to pick with the ADA, but in the end, they’re supposed to represent us, and in doing so, it’s their responsibility to make sure they’re fact-checking to make sure they aren’t further contributing to the rampant confusion that already exists about diabetes, for much of which I hold them responsible. Regardless of what they’ve done in the past to get us in this misinformation mess that we as the on-the-ground militia have to combat on a regular basis, can’t they at least get their basic facts straight and edit their content accordingly?

I know it’s one little article, not even generated by ADA staff but by a general news publication, and one little incorrect fact that amounts to a footnote in the article, but this is just one that I happened to catch. There are an endless supply of incorrect facts in both print and web publications for all kinds of intended audiences that I never see. Those “facts” pile up, and we end up paying the price with our time and energy, trying to correct people. So as insignificant as it may be, isn’t it the American Diabetes Association’s obligation to at the very least publish information about diabetes that’s correct?